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The Patient's Story

Ms C, a young woman from Central America who spoke only Spanish, initially presented during her 34th week of pregnancy with marked leukocytosis and was diagnosed as having leukemia. After giving birth to a healthy, full-term daughter, she achieved remission with chemotherapy. However, 6 months later, a bone marrow biopsy revealed a relapse. Ms C was transferred to a university hospital, where she was treated with a second round of chemotherapy. A month later, a bone marrow biopsy revealed persistent disease. In discussions with Ms C and her partner, Mr M (the infant's father), the attending oncologist stated that there were no further curative treatment options.

Ms C was the oldest of many siblings, all of whom lived in a rural part of Central America. Before her hospitalization, the patient lived with her infant daughter, Mr M, and his family. Ms C and Mr M were evangelical Christians and were undocumented immigrants. Mr M worked at a blue-collar job early in the day and took over child care duties while Ms C worked as a cook. Ms C was often deferential to her partner, allowing him to make medical decisions for her, although she had not officially designated him (or anyone else) as her health care proxy. Despite intensive efforts by the hospital social workers, it was not possible to obtain emergency visas for family in Central America to visit Ms C.

Shortly after relapse, after private conversations with the oncology team, the patient agreed to a do-not-resuscitate–do-not-intubate (DNR/DNI) order. At the time of the palliative care service (PCS) consultation on the following day, the patient had been in respiratory distress for several days but was still able to discuss goals of care and make medical decisions. Discussion with the PCS in Spanish clarified that Ms C's primary goal was to spend as much time as possible with her daughter in her remaining weeks, which would not be feasible were she transferred to the intensive care unit. Mr M, however, requested that "everything be done," saying "We continue to hope and pray for a miracle." In subsequent meetings, the PCS consultants reinforced the oncologist's assessment that curative options had been exhausted and encouraged her partner to begin his good-byes. The PCS team was less and less able to engage Ms C in discussions because of somnolence, and Mr M wished only to discuss further curative treatment options and declined to consider discussions about end-of-life care plans. Mr M adamantly maintained that there was still hope for her recovery and continued to inquire about therapeutic options such as "surgery for her lungs" and "washing her blood."

Despite supplemental oxygen and escalating doses of morphine and lorazepam, the patient's dyspnea worsened. Early in the morning a week after the initial PCS consultation, a nurse noted that the patient had stopped breathing. When the oncology team arrived to pronounce her dead, they found Mr ...